Small and I am loseing so much weight that I cry all the time .I feel so ill my stomch swells that big I look pregnant everytime I eat and the pain I am in is unreal I carnt sleep carnt eat carnt cope.And the thing that gets to me worse is I feel like I have no control of my bowls. I dont have much information about ibs as my dr didnt give me any so I have been looking for help before I go mad and I found you all .its half 6 in the morning and I am in so much pain I carnt sleep. Heartburn is something I ooly get while am pregnant but I have it a lot now does anyone else get it?.and I am not ppregnant I do not have a womb lol .I also dont know whats best not to eat because I carnt tell if its my worrie or my eating habbets that make me worse ( when I do eat that is) . My children are worried about me and I carnt help then to understand whai I dont .. can anyone help me please

18 Replies

Yes, unfortunately, many GPs are just not helpful once they've decided you've got IBS and leave many people to get on with it unsupported.

Have you been referred to a gastroenterologist for a full range of tests, e.g. gastroscopy, colonoscopy etc? If not, you must ask to be referred as it's essential that other causes of your symptms are ruled out. See a different GP if poss.

In the meantime, the best food elimination advice I can give you is to try the FODMAPs diet which works for a lot of people on here The best sources of information for the diet are as follows:

a) the smartphone app available for download from Monash University - the diet was created there and the evaluation of different foods is ongoing.

b) Patsy Catsos's book 'IBS-Free At Last!' - best to buy the actual book rather than the download the Kindle version as it's easier to read charts etc. She’s also just published a recipe book: ‘Flavour without FODMAPs’ which I haven’t yet seen, but it sounds pretty comprehensive.

c) Sue Shepherd and Peter Gibson's book 'The Complete Low-FODMAP Diet: A Revolutionary Plan For Managing IBS And Other Digestive Disorders'. Sue Shepherd developed the diet at Monash so you can't really go wrong.

The NHS has now got behind this diet, and you should be able to get a referral from your GP to see a dietitian although I didn't find its guidelines either as strict or as good as Monash's - very watered-down, in fact.

I started the diet about 2 years ago using just the Monash app and Patsy Catsos’s first book (the Sue Shepherd one has only recently been published) and found that all other information on the web was misleading, outdated and frequently wrong, so I strongly advise you just to stick with the above.

You're not alone out there and I know everybody on here will do their best to help you - and yes, heartburn and indigestion are suffered by many IBS-ers.

Omg thank you very much roz. Yes I have had colonoscopy I had 2 the second 1 was to go deeper. I had 6 biopsies taken on the first 1 and 4 taken on the second one . I got all clear on the first 1 and I have not had anything back from the second one. And my dr still didnt explain what that ment except I dont have cancer. I have not had anyother tests done at this time. I am going back to my dr because my pain is bad and I need some answers from him . I feel like a fool as I know nothing about ibs I just got told I had it 2 weeks a go even thongh I have been ill for over a year. Thank you for all the information you have sent me Roz it is so helpful thank you

3 years agoHidden

Pleasure to help.

Be very firm with your doctor and stand your ground about getting a referral to a dietitian.

Thank you again Roz I have just found the app to dowload to my phone for the FODMAP Diet I know it costs 5.60 to download but at least l will start to understand what I can eat . Have you had a lot of tests done for ibs ? Is it suppose to show up when you have a colonoscopy ? Am so sorry for all the questions Roz

3 years agoHidden

No, IBS isn't an illness in itself and, therefore, cannot 'show up' in any test. It's only diagnosed when all other known possibilities are ruled out by tests such as colonoscopy. In other words, medics don't know the cause of the symptoms (which can be many and varied) so they get lumped together under the IBS banner. It's a real Cinderella illness which gets ignored and trivialised and a comment you may unfortunately - and irritatingly - hear more than once is that 'it's all in your head'! There's no doubt that anxiety et al can exacerbate symptoms, but they're still real for all that and sometimes sufferers do manage to find the cause(s) and can act on them.

Yes, I''ve had many tests done including SeHCAT (for bile acid disorder - a possibility if you're diarrhoea-predominant), SIBO ( for intestinal bacteria), fructose and lactose malabsorption and candida (intestinal yeast overgrowth). The last one I had to pay for as it isn't a test that's done on the NHS.

Read the app info about FODMAPs carefully as it'll help you to understand more about your condition. It doesn't work for everybody and can take up to 3 weeks to kick in, I was lucky in that it only took about 4 days for me to get a real improvement in my symptoms. Patsy Catsos's book is a winner for someone new to all this as it really explains things in detail.

There are prescription-only and OTC medications that may help with your pain so be sure to ask your doctor about those too.

I don't care how many questions you come up with especially if my answers help to put your mind at rest a bit.

Thank you so much for takeing your time out to answer my questions Roz I do appreciate what you have done for me thank you . I know have a better understanding of what I have and I can tell you as you know it is definitely not in my mind lol its real . I do hope I dont come across someone that says that to me because I would not be able to told my tongue the way I feel. I have been given mebeverine by my gp I have to take before I eat but nothing else. I do not wish to take medication as I would liketo be able to get myself better without it I am not a fan of medication but the pain is to much. I am going to get the book you recommend to me tomorrow and I have downloaded the app on my phone. I dont quite understand it yet or how to use it because I havent had time with my son . So tonight I am going to be studying it till I do have better knowledge and understanding ibs and what's not good to eat. Thank you so much for all your help I know more in one day from you than I have in two week's of knowing I had it and you have put my mind at rest and shown me where to look . If I could see you I would give you some nice flowers @--->. I would like to ask you a question but its ok if you dont answer its a bit embarrassing how do you cope when you go out ? Is there anything I can do to help me not have to run the toilet . I have even got a taxi home from shopping and left everyone its so embarrassing. Sorry I hope thats not to much information as they say and I might be the only one who has this problem. Thank you again Roz

3 years agoHidden

If medication improves your lot, take it, is my advice, you can't think straight whilst in pain. Hopefully FODMAPs may help enough for you to cut it out eventually. Along with her book, Patsy Catsos also has a very good website at: ibsfree.net - lots of tips and advice on there along with Q and As from other IBS-ers. Do steer clear of sites outside of hers and Monash's though as they're very wrong on many counts and the other things to keep well away from are sites that offer intolerance tests as they're just peddling snake oil and are a total waste of money.

I doubt very much you could ever make a remark on this site that could be regarded as too much information. Everything gets discussed on here without any embarrassment whatsoever, e.g. the size, shape, colour and smell of bowel movements (bms), farting, descriptions of vomit, burping and so on! So, on to your question: some people take a diarrhoea-preventive pill (Lomotil or similar) before going out, but they don't help everybody all of the time. Nothing worked for me until I did FODMAPs and discovered what my food triggers were. I then avoided these like the plague - particularly if I knew I was going to be away from home for any length of time and my problem was 90% resolved. Food can take anything up to 48 hours to transit the digestive system, so you need to eat a 'clean' diet for at least a couple of days before a trip out and always make sure there's a loo within running distance wherever you go! All diarrhoea-predominant IBS-ers (IBS-D) have exactly the same problem, some of them have even had to give up work because of it. There are 2 other types of IBS which are just as difficult to deal with in their different ways, they are IBS-C (constipation-predominant) and IBS-A (alternating between D and C).

I have 2 friends both of whom were diagnosed with IBS and displayed many of the common symptoms, but after pressing for more and more tests, one was found to have intussusception (where part of the intestine telescopes into itself) and the other actually had adhesions from previous surgery which were causing her probs. Both of these conditions were corrected and the 'IBS' went away, so don't just accept your diagnosis without trying every other avenue there is.

Hopefully your family and friends will do their best to accept (even if they don't understand) that you have these problems and will give you some help so you don't feel embarrassed when you get caught out, but even if they don't, you can always come on here and have a moan about it, we'll forever be reliably on your side.

If you find that you are intolerant of say dairy and lactose you will have to be careful with tablet medication as things like ibuprofen contain lactose - read all the ingredients of anything that you buy over the counter or are prescribed.

Here is a link to the RADAR key which will open any disabled toilet in the country I have 2 I keep 1 in my coat pocket and 1 in my bag)

You could also try a self-hypnosis cd set from ibsaudioprogram100.com which is a 100 day course and which helped me with the anxiety side of the problem. I have the IBSnetwork.org card which I have used on many occasions to explain to people in shops, offices etc why I need to use their toilet very urgently. Luckily since doing the FOdmaps diet using only the GREEN items on the guide initially and cutting out caffeine drinks, going lactose free and gluten free I have transformed into an almost normal person!!!!? Good luck.

I was diagnosed with IBS 10 yrs ago and have also just been diagnosed with celiac disease. Saying this I have only just found out about the FODMAPS diet myself and it's very much trial and error. Just last week I saw a dietician for the first time (via my GP). There are FODMAP specific dieticians with support groups and I'm really looking forward to my first session. Via your GP you could also get a referral to Kings College London (although obviously depends on how convient this is for you). Alternatively, via this link you can find a local FODMAPS trained dietician and then you can ask your GP to specifically refer you to this person. kcl.ac.uk/medicine/research...

FODMAPS is being updated all of the time. Also, bear in mind that your stomach will now have shrunk so you will still experience some pain whilst trying to eat; little an often works best and a dietician will be able to help with some drinks which can help boost your energy and calorie levels. It's tough. I have found that I have had to do a trememdous amount of research to ensure I ask the right questions and joining this site recently has certainly been helping me.

Hi just thought i would tell you that I was diagnosed with IBS but felt like you and everytime i eat stomach swells lik.e 9months pregnant and i am 62 so not a good look, recently after 16months of tests my doctor put me on mebeverine 1 tablet 1/2 hour before eating and as long as i stick to fodmap eating i am loads better, i am now gf and lactose free. wishing you well

I think the main problem is we are "taught" to eat foods that we naturally shouldn't like cows milk for example and humans have only eaten grains for around 10,000 years. My body started to react to these foods presumably because I was eating too much of them?

yes you are right about the grains, just saw you are already on mebeverine, I am also now on Questran Lite sachets, it is foe bile acid malapsortion, perhaps talk to your doctor about that, it helps stop the running to the loo thing! What I did was right down main points to tlk to the doctor about and tried to be specific so as he would not think I was going on. wishing you well

Hi glad you're sorted now. I was prescribed mebervine but they didn't work for me unfortunately the main thing that worked was cutting

wheat out of my diet followed by milk that cut my symptoms 80-90%. Then the amytriptyline helped the remainder to make me feel "normal" gotta push the doctors tho cos all they do is treat the symptoms unless you insist on tests!

Hello Dawnann, you will have gathered by now that there are lots of us all struggling to find the answers. Have you been referred to a gastroenterologist? At least your colonoscopies were clear. however, Don't suffer in silence, do keep going back to your GP - we all feel embarrassed about keep going to the Doctor - but that is why they are there. Mebeverine helps me, along with Ranitidine at night, I also take Fybogel (at night only though). I am currently trying cutting out dairy - it might be helping although it could be a coincidence I suppose -that's the problem with ibs, it's all trial and error. Your are not on your own though, so hang in there. If my ibs is bad I plan my routes (handy toilets) etc.......

Roz has said it all Dawnann...........I will add my little bit and say never give up, keep searching for the right treatment for you as we are all different. It is worth mentioning that previous surgery may exacerbate the pain and symptoms of IBS for example I have scar tissue on my right side from the ascending colon to the liver through endometriosis in my younger years and my IBS pain is always on that side. Anxiety can make things much worse especially in cases of IBS-D so when I went through a bad flare-up on holiday I am not ashamed to admit I used pads just to calm my anxiety and I did get home without an accident. Good luck in your search for peace of mind

Omg I hope that you can all see this message. Thank you everyone for all your help and advice I can't believe how good you all are and I carnt describe how shocked I was that you all said something to me. I really dont feel so alone now at all and god help my gp when I see him . I have been feeling so low and sad for a long time not knowing what is wrong with me i am now only a size 8 and that in its self gets me down and thigs are worse with the pain and needing the toilet all the time that I carnt help but feel depressed and scared. So for you all to be there and understand is overwhelming I feel so much better. THANK YOU ALL SO MUCH.

Oh bless you hun it's awful but there is a light at the end of the tunnel. Firstly stress will exasperate any problems, I know it's hard but you must try and remove any from your life. I had to change my job and had 3

months off sick with it feeling I was going crazy! Keep a food diary and get any tests from the doctors that you can. I found for me that avoiding wheat/milk and taking 10mg amytriptyline have eased my symptoms 95%. Hopefully it will be something you're eating and not anything worse. Good luck and you will feel better I promise it's just a very hard upheaval of life/diet that we can all do without. Eating out is awful for me as I'm already a vegetarian so waitresses think I'm some health nut or on a wacky diet